Erica Tanamachi

Erica Tanamachi

Learning from my N of 1 by Mark Drangsholt


From The Quantified Self Public Health Symposium

Mark Drangsholt is a clinician scientist with a PhD in epidemiology, but the story he tells in this short talk is about deciphering two different serious medical conditions through tracking and thinking about his own personal data.

“My main story today is not about my professional life. A key event happened here in San Diego about 13 years ago. I was at a research conference, and while sitting in the back of an auditorium just like this my heart rhythm went completely haywire. The thing that was most surprising was that instead of waving my arms and asking for help, I just slumped in my chair and greyed out, thinking this was the end. I thought I was dying.”

In the years since, Mark has developed pioneering methods of self-investigation to solve his own health issues, methods that he describes here with an explanation of how they drive more widespread health discovery.

Watch Mark’s talk on Medium.

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Asking Myself 10,000 Questions by Brian Levine


From The Quantified Self Public Health Symposium

How do you study yourself when you’re not looking? Brian Levine is the co-founder of Tap2, the creator of younlocked, a unique self-assessment tool that helps individuals collect self-report data by asking questions during the phone unlocking process. By answering almost 10,000 questions during a six-month period Brian was able to find out: “Why am I so tired, and why can’t I be in a better mood?” By connecting self-assessment to the phone unlocking gesture, which is performed many times a day, Brian created a novel form of self-observation. In this short talk Brian shares some details about his rich self-collected data set that, as well as a method that, if widely adopted, could be the foundation for many new personal and public health discoveries.

Watch Brian’s video on Medium.

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Solving the Right Problem by Susannah Fox and Don Norman

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From the Quantified Self Public Health Symposium

The cognitive scientist Don Norman is one of the world’s most influential design theorists. His best-selling book, The Design of Everyday Things, has been in print for twenty-five years and is widely recognized as a classic. He is currently the director of The Design Lab at University of California, San Diego.

Here he talks with Susannah Fox, who was at the time of their conversation an entrepreneur-in-residence at the Robert Wood Johnson Foundation. (Today Susannah is the CTO at the US Department of Health And Human Services.) Susannah begins by asking Don about his idea that the first job of design is the solve the right problem. How do you know the problem you’ve chosen is the right one?

“In Human-Centered Design,” Don answers, “when we’re asked to solve the problem the rule is no, don’t solve the problem. Ask, why is that the problem? Why do you need this? What is this problem about?”

Watch Susannah and Don’s talk on Medium.

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Opening Up Access by Madeleine Ball


From the Quantified Self Public Health Symposium

The Open Humans project is one of the most radical data access efforts underway today, both exemplifying new modes of access and also revealing, by contrast with conventional research and data protection systems, how much work remains to be done in our field. Madeleine Ball, co-founder of Open Humans and Director of Research for the Harvard Personal Genomes Project explains that the main premise of Open Humans is centered on the idea that researchers should freely share data from their studies back to the participants; and that participants should be able to use a well-designed, convenient, open platform to donate their data to science without de-identification. Because Open Humans is not premised on anonymized data, it is driving toward a new relationship between participants and scientists in which with both sides have names, and must communicate, negotiate, and share responsibility. “It’s more interesting than simply allowing broad sharing of identifiable data, because it enables ongoing connections around that data so new researchers can work with that person.”

Watch Madeleine’s video on Medium.

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Make Advanced Self-Measurement More Accessible by Bob Evans


From the Quantified Self Public Health Symposium

Why can’t everybody use advanced analytics to understand themselves? Bob Evans is the lead developer of PACO, an open source tool for supporting both individual discovery and large scale participatory research. Bob originally designed PACO as a personal project to get a better handle on how he felt at work by querying himself at random times during the day, a method known as “experience sampling.” PACO has grown and developed over time into a platform for experimentation used in over one thousand projects designed by researchers, companies, and individuals. Here, Bob shares some of his lessons about how and where the individual quest for self-discovery connects with large scale research. “The goal is to make it easier for researchers and individuals to experience their own lives, be scientists, and make their own experiments at will. The long tail of questions that people want to ask is very, very long.”

Watch Bob’s video on Medium.

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The Patient Voice by Heidi Dohse


From the Quantified Self Public Health Symposium

Heidi Dohse has been a heart patient since 1983. As someone living with a pacemaker, “one of the best quantified self devices,” she’s deeply interested in understanding how patient-generated data can play a role in improving the treatment and diagnosis of heart conditions. And as a member of the steering committee of the Health eHeart Alliance, she’s intimately involved with bringing not only patient data but the patient voice into the research environment through the Health eHeart Study. Currently, there are over 20,000 patients signed up to share their data with the study. “It’s not quite a million yet, but we’re going to get there.”

Watch Heidi’s video on Medium.

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Participants at the Center by Michael Kellen

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From the Public Health Symposium

The promise of Apple’s Research Kit is that everybody can contribute to medical research. But what does this really mean? Michael Kellen is the Director of Technology at Sage Bionetworks, and was closely involved in the development of two of the four research apps that launched with Research Kit: The Parkinson Disease mPower app and Share the Journey, a breast cancer survivors research app. We asked Michael to give us early word about what was involved in opening up a platform for large-scale research participation.

Watch Michael’s talk on Medium.

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Have Faith in Ingenuity by Jose Gomez-Marquez


From the Quantified Self Public Health Symposium

“We have to have a fundamental faith in ingenuity.”

Jose Gomez-Marquez wants to live in a world where anybody can go to what he calls “the primary sources” and ask questions of themselves using novel forms of sensing. At the Little Device Lab at MIT, Jose and his colleagues focus on bringing the ingenuity of the maker movement to the world of health and healthcare. In projects like Maker Nurse , they focus on understanding the questions people ask, the problems they face, and how they develop homegrown DIY methods to find answers. In this talk Jose uses specific examples from a new course at MIT to explain the idea of “transparent boxes” — systems and technologies that allow individuals to be creative in their exploration of themselves through data.

Watch Jose’s video on Medium.

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Who Asks the Questions by Dawn Nafus


From the Quantified Self Public Health Symposium

“Literacy is a social tool, and that tool can either be used to encourage people to ask questions, or discourage them from asking anything at all.”
With this, Dawn Nafus, an anthropologist at Intel Labs who has written with great clarity about the Quantified Self movement, challenged us to think more deeply about what we mean when we call for access to data. It’s not just how we get to ask questions that’s important, but who gets to ask questions. A call for access that is focused on data flows alone will not get us to the kind of discoveries we’re after, discoveries of direct personal relevance embedded in our specific context. Dawn’s talk sparked an active discussion about the tension between aggregate data and personal data.
“If our notions of what counts as data literacy make contextual knowledge irrelevant, or not worth taking into account, then the people who do value it are never going to be the question askers — they’ll always be filtered by the concerns of others with a different kind of expertise. I’m sure you’ll agree that that’s not good enough.”

Watch Dawn’s video on Medium.

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Building a Culture of Health by Stephen Downs


From the Quantified Self Public Health Symposium

Stephen Downs, Chief Technology and Information Officer at the Robert Wood Johnson Foundation looks forward to the day when healthy choices are easy choices. That day may not be tomorrow, but identifying the early adopters, innovative thinkers, and technological disruptors can move us closer to that healthier world. In this short talk Stephen explains why the foundation decided to support the Quantified Self movement.

“One of the things you can do in philanthropy as a funder is find new and exciting sources of energy and tap into them, because social change comes from that. There’s an opportunity to leverage the data that are generated by millions and millions of people about their day to day experiences to transform health, health care research, and how health care is delivered.”

Watch Stephen’s video on Medium.

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